University of Sydney, Sydney, New South Wales, Australia.
Arthritis Care Res (Hoboken). 2012 Sep;64(9):1392-404. doi: 10.1002/acr.21695.
To describe the experiences and perspectives of children and adolescents living with juvenile idiopathic arthritis (JIA).
We conducted a systematic review of qualitative studies that explored the experiences of children living with JIA. We searched electronic databases (to week 2 of July 2011) and reference lists of relevant articles.
Twenty-seven studies that reported the experiences of more than 542 participants were included. Six major themes were identified: aversion to being different (unrelenting and unpredictable pain, disablement, internal disfigurement, differential treatment, and forced dependency on others); striving for normality (preserving social identity, resourcefulness, sense of community, focus on remission, and mastery over body and pain); stigma and misunderstanding (trivialization of disease, invisible pain, and discrimination); suspension in uncertainty (control versus powerlessness, hope versus disappointment); managing treatment (benefits of taking medicines, respect and involvement in health care, and motivation for physical therapy); and desire for knowledge (medical treatment and advances, lifestyle management).
JIA disrupts a child's sense of normality and impairs his or her capacity for social participation. Children with JIA have a sense of being misunderstood and stigmatized, and they feel perpetually caught between having hope and control over their bodies and overwhelming pain and despair. To increase their confidence, the ability to manage pain, and their resourcefulness for self-management, children need ongoing information about treatments and lifestyle management, strong social support, community advocacy, and active involvement in their own health decision making.
描述儿童和青少年患幼年特发性关节炎（JIA）的经历和看法。
我们对探索儿童 JIA 经历的定性研究进行了系统综述。我们检索了电子数据库（截至 2011 年 7 月第 2 周）和相关文章的参考文献列表。
纳入了 27 项研究，这些研究报告了超过 542 名参与者的经历。确定了 6 个主要主题：厌恶与众不同（持续不断和不可预测的疼痛、残疾、内在畸形、区别对待和被迫依赖他人）；努力追求正常（保持社会认同、足智多谋、社区意识、专注于缓解和掌握身体和疼痛）；耻辱和误解（轻视疾病、看不见的痛苦和歧视）；悬而未决的不确定性（控制与无力、希望与失望）；管理治疗（药物治疗的益处、对医疗保健的尊重和参与以及物理治疗的动力）；以及对知识的渴望（医疗和进展、生活方式管理）。
JIA 扰乱了儿童的正常感，损害了他们的社会参与能力。患有 JIA 的儿童有一种被误解和被污名化的感觉，他们感到自己永远处于对身体的希望和控制、压倒性的疼痛和绝望之间。为了增强他们的信心、管理疼痛的能力以及自我管理的足智多谋，儿童需要持续了解治疗和生活方式管理方面的信息、强大的社会支持、社区宣传以及积极参与自己的健康决策制定。
